Do you have extra costs because you or your child is disabled?

Jellybro

Ms chocaholic..... The incontinence team keep sending me samples of nappies to try on, but they don't seem to fit him properly.
Thepull up type ones seem to fit him the best, but they have stopped supplying these.
The dry night ones I buy for him are already tight, and he leaks out from it every day.

I will get back on to the incontinence team I think.
I don't mind paying out for them as it comes from his DLA.

corgiman

I use a wheelchair and am very heavy on coats as the self propel motion leave me with holes in my coats
Plus have had to pay for a bath lift plus make the front of the house more wheelchair friendly I get a small amount of WTC under the disability element so that is what it's used for

Zanzib

duchy wrote: »

It very much depends on the disanbility.
For me my son was harder on his clothes as he was clumsy so fell more often. The same clumsiness mean things got broken and needed replacing more often.

Sometimes public transport wasn't viable as he tended to panic in crowds.

Indirectly-I gave up a fulltime well paid job for a part time less paid job as with school meetings, doctor's appointment, physio appoinbtments and the difficulties of finding after school care for a child with higher/different needs working fulltime simply wasn't viable. That cost obviously over the course of his childhood years ran into hundreds of thousands (as I was still working part-time carers allowance etc wasn't payable)

Obviously every case is different but even for a disability that is "hidden" there's a lot of costs both quantifiable and less so eg the divorce rate for families with a disabled child is far higher than the norm-due to the additional stress involved.

Agree completely.

Things get broken unintentionally and need replacing; clothing gets lost and damaged quickly, so again needs replacing if the damage can't be easily mended.

And replacing stuff gets more expensive as they grow...

Yes, you buy clothes for your child as part of the normal routine, but you don't expect to have to replace them in weeks or a couple of months, which is a reality for many families with children/young people with 'hidden' disabilities.

Indie_Kid

Zanzib wrote: »

Yes, you buy clothes for your child as part of the normal routine, but you don't expect to have to replace them in weeks or a couple of months, which is a reality for many families with children/young people with 'hidden' disabilities.

And some people, like me, can only wear certain clothes and shoes. I can't believe how difficult it is to get hold of shoes with velcro / laces you don't have to tie. It seems that no mainstream shoe shop does different laces. It's either online or a sports shop that only do them.

I finally managed to get hold of some pumps (the black ones you wore at school) from Clarks. Everywhere else doesn't do them. It seems that once your feet are at least a size 1, (I'm a size 3 / 4) everywhere stops doing shoes with velcro.

Bit of an odd one possibly - I can only wear certain (ie, expensive) lip salve. All the cheap ones feel rather heavy and yucky.

Ms_Chocaholic

Indie_Kid wrote: »

And some people, like me, can only wear certain clothes and shoes. I can't believe how difficult it is to get hold of shoes with velcro / laces you don't have to tie. It seems that no mainstream shoe shop does different laces. It's either online or a sports shop that only do them.

I finally managed to get hold of some pumps (the black ones you wore at school) from Clarks. Everywhere else doesn't do them. It seems that once your feet are at least a size 1, (I'm a size 3 / 4) everywhere stops doing shoes with velcro.

Bit of an odd one possibly - I can only wear certain (ie, expensive) lip salve. All the cheap ones feel rather heavy and yucky.

I've got no real idea of your mobility/shoe issues but have you thought about Skechers? Similar to these

http://www.amazon.co.uk/Skechers-Ladies-Maven-Black-Leisure/dp/B00EHK4D2A

I have a couple of pairs and they are very comfy with a good sole too.

Tigsteroonie

We're a family who choose to manage on one income, with Marley acting as full-time carer for our disabled son. He is at school now (littl'un, not Marley :rotfl:) but there are still the daytime appointments at clinics that require a parent, or being sent home from school due to illness, not to mention the school holidays ... and SEN childcare is incredibly difficult to source - it's just not worth the income.

Things that are more expensive for us (which come out of his DLA & grants):-

• Nappies - we could use the Continence service but they haven't been very forthcoming with help so far
• Special food/diet - oh how we wish he'd eat normal food
• Extra clothes - he has no concept of "staying clean"
• Buggy - more than 10 steps and he'll sit down so, if we want to go anywhere, we need the buggy as backup (and for his own safety)
• Toys and then Replacement toys - they may be designed for children but not for destructive children who throw them down the stairs regularlt
• Security - the house and garden have to be secure so he doesn't escape

And we are definitely more fortunate than others, e.g. we don't have issues with clothing such as labels/buttons - just need plenty of spares!

We haven't yet been charged for replacement hearing aids but if he keeps losing them at this rate (one per school term) - despite the retaining cord - I wouldn't blame the NHS for charging us

kingfisherblue

IK, relating to another thread, one of your extra costs might be adult sized bibs.


Tigsteroonie, my son has had severe feeding difficulties for many years. He was born with physical abnormalities which were repaired at birth, but left long term problems as well as a fear of eating. In the last couple of years, his eating has improved, and now I no longer have to buy different foods just so that he will eat. There are still some foods he cannot physically eat, but his diet is much more 'normal' now. Although he did copy some of the children at school, his confidence to eat has come from attending Slimming World with me. My mum usually looked after him (as you pointed out, childcare for disabled children is very difficult to find). When she was ill one evening, he came with me. He loved the fuss from the ladies - he's a bit of a charmer! - so he now comes most weeks. As a result, he has taken part in taster sessions, and he hears people talk about food quite a lot. He will now try most things, and has recently developed a love of sardines! So there is hope for the future (my little fella is older than your son, he's now 16 and I can't believe how quickly kids grow up).

Richie-from-the-Boro

dori2o wrote: »

The booklet on the website is an interesting read.

Link here:

https://www.scope.org.uk/publications/priced-out

It is .. .. an interesting read, """Life costs more if you are disabled. Buying a wheelchair, higher energy bills – Scope research shows all this adds up to an extra £550 per month"""

Indie_Kid

kingfisherblue wrote: »

IK, relating to another thread, one of your extra costs might be adult sized bibs.

True. That's why I made that thread.

Tigsteroonie, my son has had severe feeding difficulties for many years. He was born with physical abnormalities which were repaired at birth, but left long term problems as well as a fear of eating. In the last couple of years, his eating has improved, and now I no longer have to buy different foods just so that he will eat. There are still some foods he cannot physically eat, but his diet is much more 'normal' now. Although he did copy some of the children at school, his confidence to eat has come from attending Slimming World with me. My mum usually looked after him (as you pointed out, childcare for disabled children is very difficult to find). When she was ill one evening, he came with me. He loved the fuss from the ladies - he's a bit of a charmer! - so he now comes most weeks. As a result, he has taken part in taster sessions, and he hears people talk about food quite a lot. He will now try most things, and has recently developed a love of sardines! So there is hope for the future (my little fella is older than your son, he's now 16 and I can't believe how quickly kids grow up).

That's lovely! I too have issues with food and there are certain foods I won't eat and so, there's food that is brought because I've requested it. (wheat free biscuits, decaff tea, etc)

Another thing is holidays. Partly to give my parents a break and I've got to have someone with me for my own safety. (because I have a habit of wandering off and can't read or understand maps)

WeAreGhosts

Heating bills

i am always cold cos of my medication but because i don't get benefits i can't get the reduced tariffs from energy suppliers so my bills in winter are high.
i have found that wrapping myself in a fleecy blanket helps though, as do hot water bottles